I have a daughter with Down syndrome, and she is 11 years old. She has been my inspiration for everything I do to make advances for people with disabilities. From the minute her butt hit the doctor’s hands, she has been in the government system. We left the hospital and became part of the government system for early intervention for infants and toddlers with disabilities. It was a wonderful program, and to this day, I attribute this program for much of how I think today. For three years, I was blessed to have the most amazing women come through my door. They helped my daughter learn to sit up, talk, walk, run. But for me… they gave me hope to move forward.
My daughter graduated from this program and I moved on to the developmental preschool program at our local public school. Ok… so you want me to put my three year old on a bus? In a car seat? To be with a bunch of other kids that have similar learning disabilities instead of typical kids she can imitate? I did as I was told… and then I quit. I promptly signed my daughter up for a regular preschool program and drove her there myself…AND… I didn’t ask to be reimbursed by the state for my mileage or tuition.
I couldn’t help but feel that I was being a little radical by bucking the system. I mean, everyone I knew fell in line and did exactly as they were told. I rebelled and I was concerned about what the consequences would be for my daughter if she fell behind. But, I did it anyway, and proceeded to make similar decisions like this every year. I told my teachers that I didn’t care too much about IEP’s and always preferred they think outside the box and not worry about the darn thing. I knew no one ever reads them any way, including myself. I had chats with the principal in her office instead of case conferences, and we truly enjoyed using my daughter as a guinea pig for different ideas. Basically, I did everything they told you not to do at the conferences about “what to do when you have a kid with a disability”. I watched so many families argue and fight with the schools, and I just never encountered this with the approach I took. My approach seemed to be working quite well; contrary to what others told me would happen.
But..I always had the safety net of a Medicaid waiver in my pocket. We rarely used it, but it was there in case something happened in the future. I hated the never ending line of government bureaucrats that paraded through my home over those years, asking what seemed to be an endless amount of meaningless questions. I liked most of the people…. but hated the intrusion. But I needed it right? I couldn’t let my daughter’s future be in jeopardy. I wrestled with why I was so suddenly able to do something I had always avoided at all costs in the past? The turning point for me was during the recent elections as I perused the multitude of polls. I found that over 70% of people wanted smaller government and taxes, but equally, 60+% were not willing to give up their entitlements. There was this disconnect.
Honestly, I had no choice in my mind… I had to give it up. Mind you, my husband makes a good living so I had some flexibility, but it’s not like we are millionaires either. I finally just decided that as long as my daughter was part of this governmental system, there would be subliminal cost to my soul. So…. we did what many consider crazy and we returned the waiver to the State.
After I got over a brief moment of fear, which my friend jokingly referred to as government withdrawal, I finally realized the heaviness that I had been carrying around for so many years. I called some providers and asked if I could go private and my husband began a new line item on our budget. But I have to say….. the freedom is exhilarating. I can’t really explain it, but I just have a peace about me that wasn’t there before and I think it is because I finally took control of my future instead of entrusting it to the government. Don’t fool yourself, government programs may be free, but they have a huge cost. And let’s face it, we all know the government’s history with providing quality services.
So how did this upper middle class gal find herself dependent on the government? Well, when your child is whisked into the system the minute they are born, you really don’t have time to think about it. You just do it. And for most of us, we need that assistance because we are in shock and we are just starting out in our lives and the associated expenses are too high. But what you don’t notice is the way the system begins to suck you in and you begin to just accept it as a way of life instead of the temporary resting place it was intended to be. In a perverted kind of way, the government promotes your participation in to it’s system – which is completely contradictory to the legislators’ intent to get you out. And stuck in the middle are families. It makes for some pretty heartbreaking moments.
I am not recommending that you walk away from all government services or cash in your waiver, (I’m sure if I did, there would be a long line of lawyers waiting to sue me), but just to consider if you really need all this stuff they say you need. And that if you are one of those 72% out there who say they want smaller government…… realize that if that is ever going to happen, someone has to be willing to give up something. Let’s be the honorable group and do our part.